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Article: Research1st: the CFIDS Association's CFS Research Info Site

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. oceanblue

    oceanblue Senior Member

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    See what you mean - this from their homepage:
    So it's disengaging from patients?
     
  3. insearchof

    insearchof Senior Member

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    I hope the CFIDS Assoc put in a submission on the proposed changes to the DSM 5 being drafted by the American Psychiatric Assoc.

    If not, then I hope they have a very good long term financial plan in place to raise funding for research for what will undoubtedly become heavily regarded as a somatic illness - as well as one that will keep their doors open, because they are going to need it.


    I posted this in comments on the last front page article you wrote Cort on CFS and Gulf War Syndrome (GWS), but your comments suggested -that due to some strange quirk, you could not see the posts - so here are the relevant parts again:



    As the deadline for submissions is fast approaching, maybe a front page article on this calling for patients, advocates, CFS orgs, researchers, physicians, allied health care workers, lawyers and politicans to make urgent submissions - might be a good idea.......because it was 20 years ago that the last review of the psych DSM took place. So if this goes through, it will be 20 years of living hell - especially for PWCFS in the USA and undoubtedly in other parts of the world.

    Frankly, I find it troubling that CFS advocates in the USA have not being more vocal and active on this issue.
     
  4. medfeb

    medfeb Senior Member

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    ISO

    Apologies if you are already aware of this...

    Have you seen the breadth of comments submitted on the issues with the CSSD during the first review a year ago. You can view some of these on the ICDWatch site here.

    While there appear to be a few changes in the proposal since last year, the essence of the issue appears to be essentially the same as during the first review cycle. As far as comments this time, I expect organizations and individuals are still reacting to the announcement for the second review period which was just recently issued.
     
  5. insearchof

    insearchof Senior Member

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    Thanks Medfeb.

    I am aware of this, but there are few points:

    *it appears that the the number of submissions that I am aware of, is poor in comparison to the number of international CFS orgs that exist and could have made submissions

    Of course these are the ones that I am aware of. The process does not publicly publish all submissions received. However, given the importance of the issue, I would have expected much more communication on this matter by the orgs, with the patient community, which I have not seen.

    *there seems to be a view, that second round submissions are replicative.

    They would be, I agree, if there was no further arguments to advance on the matter.

    However, the last 12 months would have provided all the orgs ample time to consult and lobby, medical experts, researchers, health admin professionals, lawyers and politicans for their views on what impact these changes will have.

    This material could then have been assessed for how that impacted on patients with CFS and or the public/health care system in general, and this in turn, would provide fresh material for making stronger arguments for submission in this round. Had this been done, I would not expect orgs to be hesitating to make submissions in this, the second round of public submissions.

    If the international CFS orgs, are in effect saying that there is little point submitting, then what are they telling us?

    Are they saying that they have no new material, no new arguments to advance to make their case stronger for the dismissal of this criteria?

    If so, did they lobby physicians, researchers, allied health care professionals, lawyers and politicans? If they did, they would surely be able to put together a new fresh submission. If they did not, then why?

    The efforts of other vested interest groups, bought to my attention, (that will also be affected by this classification), have been lobbying hard and consistently for the past 2 plus years I believe, and have been communicating all their efforts to their patient base.

    Is it too much to expect the same from our CFS international orgs?

    To make effective change here - lobbying other elements of the medical profession, allied health care workers, researchers, lawyers and politicans is what was and is needed.

    I would have expected the orgs to have done this and to communicate their efforts to the patient community. Have they?

    Perhaps I have been living in a larger cave than I thought for the past 2 years, which is entirely possible.

    So Medfeb, if you or anyone else can put me in the picture here and correct any misconceptions I have here - I would sincerely welcome such, because I find the whole potential scenario that may come to pass should CSSD get up, very troublesome.
     
  6. Cort

    Cort Phoenix Rising Founder

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    I 'think' the Coalition4ME/CFS will be drafting a statement on the DSM 5 and so will PANDORA. The DSM issues are so complex that I have basically just stayed away from them and know little about them. I realize that's not a very good excuse given that the issue has now come to the forefront but its the truth.....The DSM is like a whole new language.....PR is very small - just 4 board members at the moment; we will be attempting to increase our foundation, so to speak, with advisory boards which will enable us to speak out on more issues...

    I do like the idea of a Front Page article laying out the basic points which gives enough information so that people can write accurately to the organization. We need support in that, though.
     
  7. The CAA's practice of releasing new websites like resarch1rst, solvecfs etc is just plain foolish. They treat websites like ad campaigns - give the product a "fresh" look every few years. Meanwhile the main website is a confused jumble of information that is cognitively stressful to navigate. A web site is meant to be a dynamically updated accurate source of information tailored for different audiences. Creating new websites every few years just creates confusion and adds to the rats nest of information that is neither well organized nor well thought out.
     
  8. Enid

    Enid Senior Member

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    Looks great in principle Cort. US leading the way - (again !)
     

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